Caregivers are critically important to the wellbeing of many individuals with disabilities, including those with developmental disabilities. Approximately 80 % of disabled individuals are cared for by family members who all too often, don’t receive the care they themselves need. The consequences for these caregivers can be severe.
The Caregiver Action Network finds that:
- Nearly three quarters (72%) of family caregivers report not going to the doctor as often as they should and 55% say they skip doctor appointments for themselves.
- 63% of caregivers report having poor eating habits than non-caregivers and 58% indicate worse exercise habits than before caregiving responsibilities.
- 40% to 70% of family caregivers have clinically significant symptoms of depression with approximately a quarter to half of these caregivers meet the diagnostic criteria for major depression.
- More than 1 in 10 (11%) of family caregivers report that caregiving has caused their physical health to deteriorate.
- 64% of working parents caring for a special needs child believe that caregiving responsibility has negatively impacted their work performance.
Now, a group of United States senators are proposing a hotline that aims to provide caregivers of developmentally disabled individuals with emotional support and other resources.
Senator Robert Menendez of New Jersey told Disability Scoop’s Shaun Heasley that interactions with representatives from Whole Spectrum Autism, a New Jersey–based nonprofit advocacy group, motivated him to sponsor the Our CARES Hotline Act. Through those interactions, he gained a deeper understanding of the issues faced by caregivers of people with autism.
According to Disability Scoop, Menendez’ bill includes funding for a toll-free 24-hour hotline staffed by mental health professionals offering “provide emotional support, brief intervention and mental health referrals.”
Additionally, the bill would establish and sustain a nationwide databank of caregiver resources and provide one‑to‑one peer counseling giving caregivers opportunities to speak directly with trained peers who genuinely understand the realities they face.
Whole Spectrum Autism’s chief strategy and operations officer Jas Singh told Disability Scoop that too many autism families lack adequate support. He believes that if the Our CARES Hotline Act passes, it will be an initial step toward changing the status quo. “This is about more than support,” said Singh. “It is about access, guidance and making sure families are no longer navigating this journey without help.”
